Jeff and I are currently in route to Ohio State University for an evaluation to be selected for a Phase II Clinical Trial. It is a 2:1 randomized, double-blind, placebo-controlled Phase II trial to evaluate the safety and efficacy of AMX0035 for the treatment of ALS. What does that mean?! AMX0035 is a combination of two drugs that he will take in powder form for 6 months. He has a 66% chance of getting the drug and a 33% chance of getting a placebo.
This clinical trial is designed to demonstrate that treatment is safe, tolerable, and able to slow decline in function. The trial will also assess the effects of the drug on muscle strength, respiratory function, and blood biomarkers of nerve cell death.
Jeff will continue to stay on the IV treatment, Radacava. We do not believe that this drug is effective, however we don’t know that. There is no way to measure the effectiveness of it so until a better option presents itself, we will continue the current course of treatment, in addition to the clinical trial meds if he is selected. We are traveling with IV bags for a hotel drip session tonight. Jammies, IV drip, junk tv and just the 2 of us sounds like a lovely date night. My, how our evenings have changed!
Dear friends of ours will bring Evan and Cole to us tomorrow night. They have a rock climbing tournament in Columbus, Ohio this Saturday – that worked out nicely! We get to spend today hopeful for a new treatment and this weekend watching our boys compete in something they love. I’ll call that a WIN! Make it a good day, friends!
It’s time…to Shred ALS!
Tara & Jeff